Jonathan Chamberlain

Look at this photo. Bernadette and I had a lot of fun trying to cycle this weird contraption along an empty road in China. What a happy time we had that day! It is to the memory of Bernadette that I dedicated my book Fighting Cancer – A Survival Guide (this was the original title of the book which I now call Cancer: The Complete Recovery Guide) I wrote this book because Bernadette was diagnosed with cervical cancer in 1993. She underwent surgical investigation, radiation and chemotherapy and was dead exactly a year later. Looking back, if I were to summarize my experience I would say the biggest mistake we made was to do what the doctors advised. Bernadette could not have died sooner if we had done nothing.

There is no doubt that she died as much from the treatment as from the cancer itself. In addition, that year – the year of her illness – caused us a great deal of seemingly unavoidable, painful relationship difficulties as we responded to her illness in very different ways. Yet, how could we have avoided these difficulties? If only we had had a book that could lead us through the whole field from an intelligent unideological point of view. I read over 150 books and could not find the book I was looking for. Most of the books were selling single cures. Others talked about a range of alternative cures but gave no rationale for choosing this route over the orthodox route. Many others vilified anyone who suggested anything other than surgery, radiation and chemotherapy … What was the truth? And even when Bernadette died I was still faced with the questions: What will I do if I get cancer? What will I do if Patrick, my son, gets cancer? I could see that if I didn’t keep on looking for answers – and above all for a framework in which I could make a decision – I would be destined to repeat the folly and suffering that marked Bernadette’s last year. So I wrote this book partly as therapy and partly as a means of arriving at an answer for myself – an answer that I could share with friends – an answer that would lessen the suffering of mankind. I owe that much to Bernadette for the suffering she went through. It must not be in vain!

Stevie and my charity involvements

I am involved with two charities that I founded: The Hong Kong Down Syndrome Association and Mental Handicap Network China. These are dedicated to the short, seemingly tragic, but ultimately transforming life of my daughter Stevie. Stevie was born with Down Syndrome. As a result of a hole in the heart she had an operation. Something went wrong. She suffered an oxygen shortage that caused brain damage leaving her blind, epileptic and so profoundly handicapped that she could not sit or roll over. Yet she was, when she recovered from the trauma of the operation and the seizures were brought under control, a happy girl, a girl who centred us and made us understand the power of love. Quite simply, she changed our lives. She taught me about pain and about fighting back stubbornly. I have written a book about my life with Stevie and Bernadette, Wordjazz for Stevie, which was published by Blacksmith Books.

This work, in collaboration with Dr Brian and Maureen Stratford, has resulted in the establishment of a parent resource centre in Guangzhou, and an annual conference attended each year by several hundred participants from many distant parts of China. This work continues to move forward.

My life now

I am a full time writer currently living in Oliva, Spain. In addition to my cancer books I have written a number of novels and works of non-fiction. Visit my personal website www.jonathanchamberlain.com

Whatever you decide to do, good luck in your journey.

Jonathan Chamberlain

AUTHOR INTERVIEWS HIMSELF: JONATHAN CHAMBERLAIN

What is your most recent book? Tell us a bit about it.

In fact, I have three books that came out almost simultaneously – all on the subject of cancer. The first of these is my big book The Cancer Survivor’s Bible. This is the book everyone should read - ideally before they get cancer or when they are first diagnosed. The second book is The Amazing Cancer Kid – the true story of Connah Broom – an amazing kid who has beaten terminal stage cancer without the aid of chemo or radiation or surgery. And finally, I have a short book called Cancer? Don’t Panic! which people can get as a free download from my website www.fightingcancer.com

OK. Let’s start with the big book. What is it? And why did you write it?

Let’s start with the Why? question. The reason I wrote it is because exactly 20 years ago my wife, Bernadette, was diagnosed with cervical cancer. Naturally we went along with everything the doctors recommended and fifteen months later, after a great deal of pain – both physical and emotional – she died. She could not have died faster if we had done nothing for the cancer. Throughout that experience I was desperately searching for books that would tell me what to do, what was the best way to think about cancer? What were the facts and what were the options? I came to realise that the book I was looking for didn’t exist. I also still didn’t know what I would do if I myself got cancer, even though I had already read well over a hundred books. So I sat down to write the book I wished I had had. And I wrote it for me.

That first book was called Fighting Cancer – A Survival Guide. It has now been through two more rewrites and is now, at 550 pages, pretty much everything that I want people to know about cancer – and I wrote it to be easy to understand. And since it is now pretty much complete, I called it The Cancer Survivor’s Bible. This is the whole truth of cancer. Let’s face it cancer incidence is growing. Cancer is coming to someone close to us. That is 100% certain. Doesn’t it make sense to be prepared? To anyone who thinks they will just go along with what the doctor says, I will say this: You can save yourself a lot of pain and damage and very likely live longer if you just take the threat of cancer seriously and prepare yourself. It is coming. So this book tells you what the facts are, what the issues are and what all the options are. It is for each reader to put that information together for themselves. We are all different so we will make different decisions.

That’s very interesting. And what about The Amazing Cancer Kid?

OK. Connah Broom was 4 years old when he was diagnosed with stage 4 neuroblastoma. Stage 4 is the last stage, often called the terminal stage. He underwent 8 months of chemo and at the end of it he still had the same eleven tumours that he had when he started the regime. So the doctors said there was nothing more to be done and sent him home to die. Actually they did want to give him whole body radiation but this is a brutal treatment and carries very little chance of success and his grandparents, who were caring for him, managed to resist this. There was a threat the doctors would get a court order to impose the treatment on him but as I say they managed to avoid this. And so their journey began. They made some interesting choices and amongst them was a decision to do sono-photo-dynamic therapy, which they had to go to Mexico for – and it wasn’t cheap. Now, eight years later Connah is virtually free of his cancer. He still has one tumour left but the latest scans are showing that it too is dying. He is a robustly healthy young lad. This book was written to be enjoyed by pre-teens and young adults so it is attractively laid out and illustrated.

And what about the other book: Cancer? Don’t Panic!

Right. For most people the situation is this. Everyone knows about cancer in a vague sort of way but no-one takes it seriously until they themselves are diagnosed. Then they panic. They clutch at any straws the doctors offer. We can do this. We can do that. Yes, yes, yes, people say. I’ll do anything. And once they have gone this far they will reject any other information that doesn’t support this decision. Now whether or not this would be the right thing to do – in some cases it might be, in most cases not – it surely makes sense to think about cancer and to have some sort of understanding of the parameters of the question. So I wrote down some of my thoughts, some of the wisdom I have acquired over the last twenty years. And because I want as many people as possible to read it, so that people can be better prepared, I have made it available as a free download (www.fightingcancer.com) – it’s also available in Kindle and as a paperback. This book is designed to help people think about cancer in a sensible way. And yes. There is no need to panic. Panicking is definitely the wrong thing to do. People do have time when they are diagnosed to go away and read up on the subject – there really is no need to rush into an operating theatre. You can certainly give yourself three to four weeks to get your head round the situation you have now been faced with. The best decisions are thought ot, informed decisions. Panic-driven decisions are generally very bad.

So, you got into writing these books because of your own personal experience with cancer – with your wife’s cancer. You’ve read hundreds of books. What should people do if they get cancer? What’s your advice?

(laughs) I’m afraid that’s the one question I can’t answer. As I say, we are all different. We have different cancers and we have had different upbringings. We differ in age, education, social situation and in a hundred other ways. All of these things affect our view of the world. Part of the journey to recovery is doing the work of reading and deciding for yourself. That way we own whatever decisions we make. My job is to give you everything you need to make those decisions for yourself. However, I think it is very important for people to be self-aware about their own attitudes, and of the implicit attitudes of those around them so I have prepared a short questionnaire – which you’ll find in The Cancer Survivor’s Bible. Being self-aware is an important part of the process of negotiating information and if you and your partner are filtering information differently, then the result could be unnecessary conflict between you. I know about this because I have been there.. You can find the questionnaire in the first part of The Cancer Survivor’s Bible.

So who are you when you are not writing cancer books?

I used to be a teacher. I am now a full-time writer. I have written textbooks, novels, memoirs and other works. I have also founded two charities for families with children with developmental disabilities, one in Hong Kong and one in China. I have been very busy!